Urologist visit...question

[rdmc]

This is going to be long...sorry.

So I went for my yearly urology appt yesterday. I've had all the tests in the past, the CT scans, the urodynamic testing, the cystoscopes, etc. So my history is well documented...I have a neurogenic bladder, and have had "issues" off and on for years.

I've had UTIs pretty frequently of late (which is interesting because last year during this same time frame I was having the same issue...then it disappeared for months.) Anyhoo, he put me on a low dose Rx of antibiotics for a month to see if that solves that problem.

They have you fill out a sheet each time describing your urinary symptoms. Whether you have them all the time, half the time, etc. So I filled mine out. I have issues off and on with most urinary problems associated with ms...but it's so intermittent.

Sometimes I have frequency, sometimes I have urgency, sometimes I can't void properly and have some retention (yesterday in his office my voiding ultrasound was fine), sometimes I have a weak flow, sometimes I start and stop, etc. etc. etc. and those are the kind of symptoms they ask about. But it's so day to day as to what problem I'm having that I just deal with it because if it's here today, it might be gone tomorrow.

So I get a bit of a lecture from the doc about there being meds for the different problems, and am I "willing to live" this way. I'm thinking to cover all the problems I'd be adding more than one additional medication, and I just don't see a need, especially with the transitory nature of the problems. (I do have Flomax on hand, and on days when I'm having more retention than normal, I take one.) So I say, "At this point, yep, I'm fine living this way." And he looks at me like I've got two heads

I figure docs, especially specialist, as so focused on their one area of practice and wanting to make that area "perfect", they don't realize someone like an MS patient is not only dealing with urinary problems, but problems in so many other areas of their body, that they've accepted that they'll never have complete symptom relief. He also made some comment as to the fact that some issues can damage your kidneys and I had just handed him a month's worth of weekly bloodwork I had had done in September (visiting nurses) and my kidney function is perfect...but he didn't even look at that.

My question is, does anyone else have the intermittent problems, that come and go, or when you have a particular urinary symptom is it always there? Do you take more than one med to deal with the problem, i.e. wouldn't a frequency med and a retention med be contraindicated?

[Justsayyes]

Yes, my problems do come and go, all the same symptoms you describe. My urologist told me that with MS your symptoms get better, they get worse, and that is so true.

He said treating one symptom could exaserbate the other, and so he did not prescribe any meds. I think you have a very good understanding of your situation, and what is most important is that your kidney function is good.

[lucidity]

I have a problem and have now had it for a couple of years. I 'leak' just a tiny, tiny bit all the time. I went to a Urologist and the tests came back fine.

He offered me Flomax (I think) but told me that I may not want to take it b/c the side effects may be more annoying than the original problem.

It was refreshing to have a doctor not push drugs on me. He implied that if I could be okay with the leaking, that I should just deal with it.

I already take a shot a day, plus supplements and birth control. I don't need more medicine in my body so I just wear a pantyliner every day.

You sound very level-headed in your situation and I agree with your point of view.

[coral12]

MS bladder

What a perfect time to read your message. Yes I have one of those bladders. I do not have a urologist. But was diagnosed with the MS bladder. I tried Flomax but it made me floW and flow.

Now I fear I might have a bladder infection I can not stop peeing. Never had one before. I am drinking tons of water to possibly wash out the infection.

Coral12

And my friend cathed. I do not want to do that yet.

[MSW1963]

I have had similar bladder issues, urodynamic testing and a neurogenic bladder dx. A decade before my MS dx, I spent my 20s in my gyn's office with constant untreatable UTIs, visible blood with lots of pain.

I eventually stopped having UTIs, but now I have spasms when voiding that leave me whithering in pain on the floor.

I did consult with a regular urologist recommended by my then neuro. On my followup appointment with him after one test or another, his nurse was having test results faxed during my OV. He started discussing the type of surgery he would perform. I was kind of stunned and then it infuriated me. I'm not sure the test results arrived before my appoitment was over.

My understanding of neurogenic bladder is it's not correctable w/surgery. Surgery can exacerbate neuro related problems and while I don't know that for certain, he was not discussing anything related to a MS bladder problem.

I think this doc was hoping the days surgical appointments would pay the next country club dues or lux car payment.

I did cross paths with this doc a few time after that last appointment. He always acknowledge me w/a mouthed hello or a nod of the head, but I would stare right through him. I hope I was an embarrassing reminder to him every time he laid eyes on me.

[MSW1963]

I forgot to say that I agree with your intituition about treating every sx. I refused the standard treatments for my bladder issues because of side effects.

There was a day very early in my dx when I gathered all the meds I had been rx and it was clear this medicating everything with more side effects from the med was not the road I was willing to travel.

[rdmc]

Thanks ladies for the replies. It helps to validate what I'm experiencing.

MSW, I did want to comment on the surgery issue. I was told, years ago, all my "leaking" problems were from the neurogenic bladder and retention overflow, so I just put up with it. However, I had some severe prolapse problems a few years ago, and had to consult a urogynecologist. He did urodynamic testing again, and said he thought some leaking might be caused by prolapse, and since I was going to have to have the surgery for the prolapses anyway, they'd see to the bladder issue. (btw, he blames my prolapses on MS, and weak musculature due to lack of innervation of the muscles of the pelvic floor...I had no real risk factors for prolapses, one kid, c-section usually means I wouldn't have a problem, but I had a profound one with multiple prolapses, and MS is listed as a cause of prolapse.)

Anyhoo, he was right, the surgery did clear up 90 percent of incontinence problems. Didn't help all the other bladder symptoms, and I still have issues with leakage if I get hot (it seems to be one of my heat induced symptoms.)

But if anyone is going to really get the scoop on incontinence and surgery, etc. seeing a urogynecologist is a good call.

[MSW1963]

My risk factors are very low as well, one adopted daughter and no weight issues or any others to account for the extent of my bladder problems.

I didn't understand that neurogenic bladder could result in weakened muscles similar to weakness originating from other conditions. Thanks for the explanation.

[rdmc]

My risk factors are very low as well, one adopted daughter and no weight issues or any others to account for the extent of my bladder problems.

I didn't understand that neurogenic bladder could result in weakened muscles similar to weakness originating from other conditions. Thanks for the explanation.

Hey MSW,

Well it's not the neurogenic bladder that causes the weakened muscles in the pelvic floor. It's just that if MS happens to affect the muscles of the pelvic floor, then you can develop muscle weakness and prolapse. Neurogenic bladder is an entirely separate entity. In my case I thought the neurogenic bladder was causing the "leaks" when it was actually the prolapses that were the culprit.

Ain't MS fun

[kimik1]

urologist visit revisited

So, I'm new to the whole MS world, having been diagnosed August 9, 2011. The symptom that took me to the doctor was a bilateral visual one. Looking back, however, i believe I had an exacerbation, having no idea it was one, about 8 months ago.

I didn't know urinary symptoms were common in MS, in fact, even as a nurse, had never learned such a thing in my education. However, my symptoms were extreme frequency and urgency, lasting a total of about 8 weeks, but then not relenting completely.

Now I have what I call (and forgive if this is a bit... crude.. one must find humor in these things) my "pee" days, where it's worse, the urgency and frequency revisit, and then other days when it's not so bad.

I saw my neuro Wednesday and he has suggested the urologist, whom I will see November 17. My question is, is it worth all the expense and testing (and will I require multiple visits to accomplish whatever testing is required, or will they be able to do it in one visit in the office) if the conclusion will just be "oh this is MS bladder, if you can tolerate it, you'd be better off staying off meds."

Just thought I'd get some opinions before I jump into the urology game.

Thanks for any thoughts,
Kim

[rdmc]

So, I'm new to the whole MS world, having been diagnosed August 9, 2011. The symptom that took me to the doctor was a bilateral visual one. Looking back, however, i believe I had an exacerbation, having no idea it was one, about 8 months ago.

I didn't know urinary symptoms were common in MS, in fact, even as a nurse, had never learned such a thing in my education. However, my symptoms were extreme frequency and urgency, lasting a total of about 8 weeks, but then not relenting completely.

Now I have what I call (and forgive if this is a bit... crude.. one must find humor in these things) my "pee" days, where it's worse, the urgency and frequency revisit, and then other days when it's not so bad.

I saw my neuro Wednesday and he has suggested the urologist, whom I will see November 17. My question is, is it worth all the expense and testing (and will I require multiple visits to accomplish whatever testing is required, or will they be able to do it in one visit in the office) if the conclusion will just be "oh this is MS bladder, if you can tolerate it, you'd be better off staying off meds."

Just thought I'd get some opinions before I jump into the urology game.

Thanks for any thoughts,
Kim

I'd see a urologist, at least to get established with one in case you have more MS related bladder issues in the future.

The test they usually do is called urodynamic testing. He/she probably wouldn't do it on your first appt...but at another one. It's not a pleasant test, but not that bad either, IMO.

The testing I talked about in my post happened because I had repeated infections that I couldn't get to clear up and that's why I had the extra tests.

As far as medication, if you have one symptom, say frequency/urgency, there are good meds for that. Many folks on this board take meds for it. I guess it all depends how much it affects you. I work from home, so most bladder symptoms are easier to handle than if I was in the workplace.

As far as bladder issues and MS...according to this article by the NMSS it's estimated that 80 percent of MS patients will have bladder dysfunction at some time during the course of the disease...it's right up there with fatigue, as far as "universal" symptoms go.

Here's a link with a brief description:
http://www.nationalmssociety.org/abo...ion/index.aspx